Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

May 13, 2017

Saturday, May 13, 2017Tonight's picture was taken in May of 2009, at the Mattie March. You can see Mattie upfront in the wheelchair, being pushed by Linda (Mattie's child life specialist). It was a very memorable event and we were thankful Mattie's blood counts were high enough to attend and be around so many people. I naturally reflect on this event, as our annual walk is only a week away!Quote of the day: The world would be a nicer place if everyone had the ability to love as unconditionally as a dog. ~ M.K. Clinton

In the midst of walk items all over our home and constant work, we have Sunny who forces us to stop what we are doing and enjoy a moment. Of course it is directed at meeting Sunny's needs, but he does get us out of our rut!

This afternoon a colleague of Peter's had a party at her home for the office. Sunny was also included as other dogs were going to be there. We got to see our God daughter, Charlotte as well. Charlotte just turned 1 in February, and she has already grown tremendously since we last saw her.

This is typical of Sunny. If he sees us paying attention to something or someone else, he is immediately on the scene to check it out and get into the mix. Sunny is very gentle and calm around people of all ages, so I never worry he is going to do something naughty. But he is fascinating to watch and we are quite certain if Mattie were alive, he would have LOVED Sunny!

May 12, 2017

Friday, May 12, 2017Tonight's picture was taken in May of 2009, at the Mattie March. This was an event that Mattie's school hosted for him to bring our entire community together in support of Mattie. Mattie had a great time that day, and there were hundreds of people in attendance. From Mattie's preschool, elementary school, Peter's work, my university, friends, and family. In addition, most if not all of Mattie's treatment team were present! I have no idea what nurses were left at the hospital, because they all seemed to be on the field with us. Pictured here is Tricia! Tricia was Mattie's favorite nurse. Tricia and her family haven't missed a Mattie Miracle Walk yet. Peter and I feel very close to Tricia, because she truly cared for all three of us, advocated for us, and when you live with someone day in and day out in a hospital setting, you practically adopt them into your family.

Quote of the day: Sentimentality is a form of fatigue. ~ Leonora Carrington

I had what seemed like an ALL DAY licensure board meeting today. It was about five hours long, and after it was over, I developed a migraine. So tonight's posting will be short. But the quote above struck me when I saw it. Typically when I run our monthly licensure board meetings, I am the one who falls on the more rigid end of the spectrum when it comes to ethical violations or issues that come before the board. But today, I was very different. I really felt for everyone who came to talk with us. That has its pluses and minuses, which I won't get into here, but I do think being fatigued does affect how we respond to people, activities, and incidents. I saw it in myself today.

Meanwhile at Mattie's high school, donut sales were going on. Who knew Donuts = Mattie Miracles?!The young girl with the Cornell t-shirt on is Abbie, my friend Ann's daughter. Abbie sells donuts at the school every Friday with the helps of Tim (on the right of Abbie). Tim and Abbie both were in Mattie's kindergarten class. YES kindergarten. Which is ironic, because they kids are in 9th grade, and I am trapped in kindergarten. Abbie's donut sales at school have produced the largest walking team Mattie Miracle has ever had! Her team has 25 walkers! The whole notion of a donut makes me laugh, because early on in Mattie's treatment all he craved was a vanilla frosted donut. So our motto then was ....... ONE DONUT A DAY AND EVERYTHING WILL BE OKAY! Literally this is a lyric from a song, a song which Mattie played constantly: https://www.youtube.com/watch?v=b36sUPqE8Gg

Abbie did donut sales last Friday. Apparently it was so popular that kids lined up today for donuts! As students made a Mattie Miracle donation, they received a donut in return! If we could only replicate this model at all our local schools, the Foundation's possibilities would be endless!

May 11, 2017

Thursday, May 11, 2017Tonight's picture was taken in July of 2009. Mattie was home between treatments and he and Peter literally built the Taj Mahal out of Legos in about two days. Keep in mind that this structure has almost 6,000 lego pieces! Legos were our God sent while Mattie was battling cancer. Because he lost his mobility from limb salvaging surgeries, Mattie needed more hands on activities. Fortunately Mattie always loved to build and be creative and Legos gave him that venue. We had Legos all over our home and the hospital! In fact, after Mattie died we donated many thousands of Lego bricks to charities! One thing that is very apparent at our annual walks..... Lego activities. Legos are part of our event because they played such a significant part in Mattie's life. Legos are not just for fun. You can learn all sorts of things from Lego building, and we wish to inspire that at our Walks in memory of Mattie.

Quote of the day: Some people walk in the rain, others just get wet. ~ Roger MillerI am sure there are plenty of people who just 'walk in the rain.' I am NOT one of them. I truly can't stand the rain, the dampness it brings, and the grayness. It is the royal trifecta which is depressing. On top of balancing a ton for the Foundation, I had to take the car in to be examined! We bought the car last May, and I have noticed that the radio and GPS periodically go out. You just can't turn them on, or better yet they are on and working and then automatically shut themselves off and you can't turn them back on. Yesterday I experienced this for two hours. It is a problem when you plug in an address in your GPS and are following it until the system crashes. Then I am LOST! I waited for the car for four hours today. No updates on it after two hours and Peter text messaged me to find out what was going on. I was sitting at a Starbuck's down the block, but called to talk to a service person. This fellow irritated me within the first two seconds. I was just about to blow up at him when I logically thought about the fact that this wasn't going to help me get the car any quicker. So I then appealed to his logic and reasoning and it actually worked out. Once he realized I wasn't complaining about the timing, but about not being kept in the loop as promised, he was able to rectify that. Not sure what the moral message is to this, other than when one's schedule is full, this is when a car starts acting up. Naturally (as this always happens to me), they found NOTHING wrong with the car's system. It is like when you go to the doctor, as soon as you are being examined the pain subsides, until you leave the office of course. So I told the service rep today.... I better not be coming back to you with this same problem a week from now.Of course the rest of my day is filled with Walk issues, processing donations, and coordinating the event. I remember one friend saying to me a year or so ago that the Walk must just run itself now that I have done it a couple of times! DON'T I WISH THAT WAS THE CASE! Still waiting for that to happen... NO LUCK so far, and we have been doing this for 8 years!

May 10, 2017

Wednesday, May 10, 2017Tonight's picture was taken in July of 2009. Literally a month before we found out that Mattie's cancer was terminal. I mean seriously look at Mattie. Does he look like he was about to die in two months? It is still hard to wrap my head around this. This photo was taken during one of Mattie's PT sessions in the hospital. Anna, Mattie's PT, was fantastic! The ultimate PT. She wasn't only competent but very skilled with dealing with the physical and mental challenges Mattie faced. Anna was the only one who was honest with me about the physical disabilities Mattie faced post limb salvaging surgery. Which I appreciated because without her knowledge, I would have thought something was wrong given that Mattie wasn't progressing with his movement. Anna found fun and creative ways to get Mattie up and using his body, which wasn't easy because he was typically in pain.

Quote of the day: I am somewhat exhausted; I wonder how a battery feels when it pours electricity into a non-conductor? ~ Arthur Conan DoyleI relate to Sir Arthur Conan Doyle's quote tonight. At this time of year with the Foundation's biggest fundraiser, I have two modes...... VERY ON or OFF from exhaustion. I work around the clock on walk details, coordinating people, and trying to raise money. Any one of those items is enough for one person, adding them all up together, it is too much..... and tonight I have hit my tired limit. Here are some Walk Facts:

As of today we have reached 72% of our Walk goal: $57,253 (goal is $80,000)

Mattie Miracle is very transparent about how we spend our Walk proceeds. A good chunk of the money goes to our local programs (child life and snack carts) and the rest goes to our national psychosocial standards project (which is now working on implementation of the standards).

Mattie Miracle runs two snacks carts that offer FREE drinks, candy, more nutritional snacks, and toiletry items to families caring for a child in the hospital. These carts are located at MedStar Georgetown University Hospital and Children's Hospital at Sinai.

Meet Morganne........MedStar Georgetown University Hospital's newest member of the Child Life staff. Morganne's position is funded fully by Mattie Miracle. The Foundation established the Mattie Miracle Child Life Program Fund in 2011, because we know the importance these specialists play in the daily lives of children with cancer and their families in reducing fear, anxiety and pain. On average this Mattie Miracle position supports the lives of 3,500 children and families at the Hospital a year.

May 9, 2017

Tuesday, May 9, 2017 -- Mattie died 399 weeks ago today.Tonight's photo was taken in July of 2009. Mattie was home from the hospital between treatments and wanted to help us paint the deck. Frankly I don't know where we got the energy to paint the deck, but we most likely wanted to keep Mattie engaged and occupied. Mattie, prior to cancer, always helped us paint. He was very good at it..... neat and precise. However, Mattie's arms post-surgery were never the same. So as you can see he was using his left foot (the only appendage NOT operated on) to paint. I am sure I thought this was a sight at the time, which was why I snapped a photo. Quote of the day: There are always flowers for those who want to see them. ~ Henri MatisseI went to Mattie's school today for the third and final session with the kindergarten class. Two weeks ago we covered Picasso, yesterday we discussed Matisse and today we talked about the friendship/rivalry between these two amazing 20th Century artists. Picasso and Matisse were competitors and they both would admit that they studied each other's works and in the process adopted some of the same techniques. Picasso began to integrate color and Matisse shapes. But it was in this competition, that each artist strove to be the best, and out do the other. I showed this short video to the class today...........................

This year I kept my presentations down to ten to 15 minutes. The remainder of our hour together was dedicated to a hands on activity. I brought in the vase, flowers and fruit today so the children could paint their interpretation of this still life. Picasso and Matisse did many still lives, but the beauty of these artists was they used their imagination and the result was something that was abstract rather than bordering on realism.

Here is one interpretation of the still life scene above!

Here is another painting. The children were encouraged to find their inner Picasso and Matisse. That they could paint using concepts from one or both of these artists. For the most part, each of the seven years I have done this, children gravitate to Matisse.... the master of colors.

Another example!

After the painting session was over, we placed the canvases outside to dry. It made for a very colorful backdrop. As you can see each painting is quite different. Which got to the my original point with the class. Our art is original because each of us brings to it our own thoughts and feelings. I am not sure how I balanced this with Walk plans, but I managed and it was a positive diversion.

May 8, 2017

Monday, May 8, 2017Tonight's picture was taken in May of 2009, at the "Mattie March." Which was an event held in Mattie's honor at his school. The event united all of our support communities together, and this event is what served as the launching point for the Mattie Miracle Walk & Family Festival after Mattie died. Pictured with Mattie is Bob Weiman, aka The Magic Man. Bob is the head of Mattie's lower school and while Mattie was undergoing treatment Bob came to visit Mattie almost weekly and with each visit taught Mattie a magic trick. Magic became an important part of Mattie's hospital life because it taught him skills others around him did not have. Mattie performed for nurses and others, and magic gave Mattie a sense of accomplishment and self confidence. At the Mattie March, Mattie and Bob performed some tricks together (as you see here). Bob was holding something that looked like a jar of peanut butter. However, Bob unofficially named the trick, "the Mattie Brown." Mattie loved this peanut butter trick and Bob performs it at every Foundation Walk. Bob is one of the traditions we have at the Walk. Others may not know this, but Peter, my parents, and I do (and of course Bob!). Quote of the day: If you could only sense how important you are to the lives of those you meet; how important you can be to the people you may never even dream of. There is something of yourself that you leave at every meeting with another person. ~ Fred Rogers

I think Mister Rogers' quote is so poignant and truly gets at my experience with teaching session two to kindergarten students today. Two weeks ago, I went to Mattie's school to do an art lesson to six year olds about Picasso. I have been doing this series for seven years now. But my first session, was challenging to put it mildly, so I wasn't sure what today would hold. But I would have to say what the children taught me today, was exactly what Rogers described...... every interaction with someone does leave an impression. We may not be able to see or feel it at first. I thought my first session was a disaster with this group of students because I couldn't connect with them. But today was different and the one student who troubled me the most last time, handed me a gift today. She made a book (as the photo shows) of her art work for me and wanted me to have it. I was actually flawed because this seemed like a night and day experience from our first interaction together. Today's session was on Matisse. I recapped the previous session we had together and then gave talked with them for a few minutes about Matisse. The children then saw this cartoon story which is only a few minutes long on Matisse.................https://www.youtube.com/watch?v=s37OoBXkYAc

As Matisse aged and developed cancer (which I did not tell the students), he became weak and wheelchair bound. However, that did not stop Matisse from creating! He migrated away from painting to painting with paper..... cutouts (as the photo shows). So the activity the children worked on today was designing their own paper cutouts. They were given paper and could cut any shapes they wanted and arranged the pieces on a board. Each of the 12 creations were SO different. In fact, the children really came to life as they imagined, created, and talked to one another while creating.

This little boy created a bowl of spaghetti. Rather clever!

This little boy created a flower.

This little girl created a cutout of herself swimming.

This little girl created a seascape featuring turtles and the green tower is a telescope to look under the water.

This girl created a cupcake with a birthday candle on top!

This little boy was the first to do the 3-d concept today and then others followed suit. But his structures represent a duck with a green hat, a pink person and blue flag. In essence this is true Matisse, because Matisse never represented an object with its actual or realistic color. So for example, Matisse could represent a banana in purple or black (but probably NOT yellow). It just depended upon how he felt about the object.

This little boy created a pink person and in the tube, were "brain parts."

A group view of many of the creations!

Of course I never walk around Mattie's school without visiting his tree. His tree is in FULL bloom right now.

These are the beautiful yellowwood flowers on Mattie's tree. The tree blooms every year around the Foundation's Walk. I view that as another Mattie sign!

May 7, 2017

Sunday, May 7, 2017Tonight's picture was taken in June of 2009. We went over to visit a friend of mine and her family had a pet parakeet, Ginny. Ginny liked to fly about the house and decided to perch on Mattie's shoulder. Mattie had NO IDEA what to make out of this. Which was the priceless expression you see here. Ginny seemed to like Mattie and though under normal circumstances Mattie probably would have loved this connection. But given all Mattie dealt with from his treatment he was somewhat frightened and did not like the feeling of her claws on his skin. Quote of the day: A clay pot sitting in the sun will always be a clay pot. It has to go through the white heat of the furnace to become porcelain. ~ Mildred Struven

I am beyond thrilled to have the raffle baskets behind me! In so many ways hosting a raffle at the Walk is like an event within an event. I am thankful to my friend, Carolyn, who has been our raffle chair and my raffle partner in crime for 8 years now. Together we solicit, accrue items, purchase items and then transform them. I have been staging these items for a week now, and Peter helped me wrap them with cello wrap, which really requires four hands.

We wrapped 9 our of 10 baskets, and the tenth we are still awaiting items on!

We have 10 amazing baskets and to read the details for each basket and to purchase tickets, go to www.mmcfwalk.com. All raffle proceeds go to supporting our psychosocial programs to assist children with cancer and their families.

A raffle close up! As of tomorrow, all these baskets will be out of my home and into Carolyn's! Making way for more Walk preparations that are underway.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.